Great photo David… Mo certainly worked her magic by knocking out that bench with her small magic staff. 🙂

Where are you in the photo? 😎

Dai.

Superstar??? That's a new one to me… that's Tom's field…regular, yes but not as regular as I once was because I don't have as many contemporaries as I once had… people going through the sam things etc., – I am now quite ahead of the field… mind you, saying that I am on Velcade for the 2nd time, after a very successful 6…[Read more]

I sometimes get the feeing that one day, out of the blue, you will get pulled in and your consultant will sit you down with a grave face and say.. sorry Tom but we made a mistake, way back when… 🙁

It seems that you don't actually have MM… in fact your complaint was linked to a blood disorder that affected your bones and showed…[Read more]

I appreciate that this news must have been devastating for your family… devastating and frightening at the same same I imagine.

My 3 children have all voiced their concerns… but checks with their GPs have shown completely normal levels at this stage… I have told them to check in with their GPs as they grow older, every…[Read more]

I was also trace for a while before being declared in 'complete remission', following my CDT. I was declared in 'complete remission' at my 100 day post SCT stage and then 'relapsed' after my 300 day stage… so, as my American friends are so fond of saying… 'Go Figure'.:-P

I can't.;-)…[Read more]

I have been following your thread with deep interest and keenest sympathy… 😐

The longest serving MP in the House Of Commons is called the 'Father Of The House', purely for his longevity as a member and some supposed wisdom or memory of events undertaken in his or her time there. I am not sure if I am the MUK's…[Read more]

I am now back on Velcade for the second time, having completed 6 Cycles between May & November 20011 (slight break for a holiday in September, 2011) . First time round it was cannulated, this time Sub-Cut.

This is only Cycle 1. With Velcade on Days 1 & 8 and then 11 & 19… with Dex on Days, 1,2, 8 & 9 – 11, 12 & 19 & 20. I…[Read more]

That sounds like a series of marathons to me at this stage and I bet you are glad to have had Mo beside you to medicate and guide you with stiff words and the occasional stiff arm.8-)

Any more trips on the horizon… or is rest up and recover for a while the order of the day.:-D

Dai.

Have you asked your consultant about the possibility of MUK5? Is it being operated at your hospital? The chance to get on a Kyprolis trial is worth taking if the chance is there.8-)

Go look see and ask.:-)

Dai.

I was initially diagnosed with secondary bone cancer, primary unknown by my relatively small local general hospital in North Pembrokeshire. They carried out a number of tests including one for MM. The haematologist who carried out the test said that he would bet his house on it being MM as all the symptoms were those related to MM…[Read more]

Blood was taken and I waited… a consultant down, so the wait was a good part of an…[Read more]

This is the question that Eve asked:

[b] 'My Question is, have the MM TRIALS become more important than the individual patient?'
[/b]

Eve will no doubt…[Read more]

Keith was a true friend to us and I hope we continue to remember his contribution to this board (old site and new).

Farewell Keith… Da Bo Chi, rest in peace.

Dai.

You say that Adrian and his Doctors were both positive after his first cycle of his frontline treatment… with a drop in his light chains from 327 to 37 he would have every reason to be positive. The fact that his Doctors were positive as well suggests that they were not too worried about his other problems, specifically his…[Read more]

First things first, yes I was deeply saddened by the news of Keith's passing. One moment you are exchanging views and information about treatments, plus a few wants and needs about life away from MM and the next the news comes in that they have suspended treatment while Keith was in hospital. :-/

It was no surprise from then on…[Read more]

Dai.

My first response to your opening post was to say that while the SCT route sounds terrifying, like most things in life the actuality is far better that the imagined… and I hold to that.

Then there is another part of the big question that I did not address… that of whether to actually have the transplant or not. You have had…[Read more]

I feel we have had no luck at all along the way, drugs not working and now not recovering well from the…[Read more]

I hope someone comes along soon that will direct you to all things Barts and that you are suitably impressed.

Two things:

1. Your Mum has been blessed with an excellent return from her CDT by getting her PP's down to 5… well done her. 😎

2. The SCT process (the end bit, after the stem cells are returned) is unpleasant, no…[Read more]

You are quite right, the Elephant interferes far too often, especially when you ate running out of options.

I think he enters the room as a baby elephant, something akin to Dumbo without the oversized ears about the time of the relapse from the first (for some of us only) SCT, That's when you take note of the treatments and options…[Read more]

Mid-June seems far off but its only 7 or 8 weeks away… the time will fly but try to enjoy it as much as you can. The further you go along the MM path the more you will want to jam the brakes on.

There are plenty of blogs about the experience of SCT's and even some excellent recollections and SCT 101's… but unfortunately they…[Read more]

Perhaps campaigning is not seen as a function of this forum but there is a small part of me that thinks our combined experience.…[Read more]

Now, I've got to get myself one of those. 😎

Dai.

Dai.

He started Bendamustine a Cycle ahead of me but it didn't take due…[Read more]

I have been following Ian's progress and I am so glad that he is doing so well… but… while I can understand stopping treatment to allow Ian's body some respite by way of letting him recover from his bedsore etc., I don't understand why treatment has not continued now that the shingles have gone and he is on the mend. kappa…[Read more]

Welcome to the forum, I am genuinely sorry you had cause to seek us out but now that you are here I am sure you will find us supportive and willing to share the sum of our experiences. The first thing I should say is that you will never be guilty of the act of 'it's just me'… I assure you that will never be the case. Big things,…[Read more]

I am so glad that you were able to be with your Dad at his peaceful passing… and that you had the support of your husband and your Mum-in-Law in the immediate aftermath. From your opening post of this thread it seemed obvious that your Dad knew that his end was near and the gift of flowers, for the first time ever, was his way of…[Read more]

Glad you are on the mend but take care to finish your AB course and don't go jumping in puddles… as yet.:-D

What you need is a [b]'Work Onesie'[/b] TM… [quote]Made of a rainproofed but breathable soft Nylon outer skin with a brushed Raylon inner, the [b]'Work Onesie'[/b] is extremely flexible, promoting an ambient skin…[Read more]

After suffering 2 spontaneous fractures, small but painful nevertheless, one on on the very top of my left arm and the other about 10 inches away on my scapula, I was given a meeting with a consultant from a neighbouring and bigger hospital, QMC. I should say that by the time this meeting took place both fractures had more or less…[Read more]

I have seen that the symptoms are listed and a nurse mentioned a sheet last time… she asked me if I was given one and I said no… she said I would have one to take home but I never got it… I will ask for one next time I am in.

I don't think it is proper flu Tom, I don't have any of the…[Read more]

First off I have to say that I have no way…[Read more]

I remember you posting last year, as a football fan your name earned instant recognition.:-)

Yes, the waiting around is an awful time… the not knowing, the struggling to let go of the remission status and the reluctance to fully accept that you have indeed relapsed. If it is a blip then your relief will be profound… but if…[Read more]

Like Helen, Eve and the others I too had been wondering where you were. I put out a call for Keith and was mindful to put one out for you but I wanted to wait another week to allow for holidays etc., with it being Easter and all. Then you tell us you have had pneumonia… I wasn't worried about MM as I am with Keith but you were…[Read more]

I discussed the MUK 5 trial with my consultant again this last Monday and she was quite adamant that the trial had not yet reached Nottingham… this being so and with her stating that the Bendamustine needed watching because the reading was up slightly, makes me wonder why she did not raise the question of the 'Endeavour'…[Read more]

It wasn't cowardice but I didn't ring in today. The treatment has hit me harder than before over these last two days and when I started the day my Dex kicked in and I was snappy and short tempered. I apologised to Janet the first time… for snapping and for the snaps that might…[Read more]

We are so glad that Velcade has worked so quickly and so well for Sam. It did so for me, taking two cycles to get right down but it nuked a secondary cancer on my sternum as well so I'll allow it some grace.;-)

The next few treatments can be faced with a smile and you can face the preparation for his second SCT with a positive…[Read more]

I am a great believer in Revlimid. I was on it from the first week in March 'til mid-November 2012. I picked up the C: Difficule bug in May and it played havoc all year although it wasn't diagnosed until late July (although my ex-wife, a senior care supervisor recognised the symptoms and called it in June). I was taken…[Read more]

I am currently on Bendamustine… I have had CDT, a SCT, Velcade and Revlimid. There have been times during those treatments where I felt as strong as a new born babe and I couldn't imagine ever feeling anything near 'normal' ever again… but then I turned a corner and within days I felt really good and the feelings of absolute…[Read more]

Janet has bought me a bottle of double chocolate stout and I aim to enjoy it… perhaps over 2 days after next Tuesday…[Read more]

I had my second infusion of Zometa today after my Bendamustine infusion. I asked about the regime and I was informed that I will have 8 monthly infusions, followed by 8 bi-monthly infusions and then stop.

So that's the Nottingham regime. 🙂

Regards

Dai.

Ellen is the administrator and specialist nurse at Myeloma UK, the hosts of this forum… the contact number is in bold orange at the top of this page but here it is: [b]0800 980 3332[/b]

The nurses at Myeloma UK will answer any query concerning Myeloma for you on the phone. 🙂

Regards

Dai.

Perhaps Scarborough is a little too impersonal, as well as being far away, even if it was a place you both enjoyed visiting. The cricket pitch sounds really good for you, because you will be able to visit easily, walking and talking as you traverse the ground… although you might want to talk internally if there is a match on… ;-)…[Read more]

After 4 years I had my first infusion of Zometa tagged on to my 2nd infusion of Bendamustine Cycle 3 last month. Tomorrow will be my 2nd infusion of Zometa with my 2nd infusion of Bendamustine Cycle 4… I had the symptoms described by others as 'Zometa Flu' last time but nothing too unpleasant… I will monitor and report over the…[Read more]

Remind me, where is Colin at the moment… post SCT but for how long etc… and is he on any treatment, maintenance etc.

Regards 🙂

Dai.